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Understanding the Impact of Cancer Bereavement

In both the UK and Ireland, cancer represents the leading cause of death, with millions of individuals affected each year across all demographic groups. While much is known about the medical aspects of cancer, far less is understood about what happens to those left behind when someone dies from the disease.
This survey aims to change that. A team of researchers from Ulster University and Queen's University Belfast want to learn more about the psychological and social impacts of losing a loved one to cancer — how it affects grief and emotional wellbeing. By taking part, you’ll help us understand experiences of grief, depression, anxiety, and how relationships change after such a loss.
Your responses will help researchers and support organisations better plan and provide the care and services that bereaved families need. Thank you for considering sharing your experience.

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Participant Information Sheet

Title of study: Grief, Loss and Bereavement Survey

You are being invited to take part in a research study. Before you decide whether or not to take part it is important that you understand why the research is being done and what it will involve. Please take the time to read the following information carefully and discuss it with others if you wish. Please ask us if there is anything that is not clear or if you would like more information. Thank you for reading this.’

What is the purpose of the study?

While much is known about medical treatment and outcomes for many forms of cancer, very little is known about how those bereaved are affected after someone dies from cancer. This study aims to explore psychological and social impacts of bereavement following a cancer death - focusing on prolonged grief, depression, anxiety and help-seeking. The findings will help researchers and support organisations develop better ways to understand and assist people who have lost someone to cancer.

Why have I been chosen?

You are being invited to take part because you have experienced the death of a family member, partner, or close friend due to cancer.

You must be:

(1) Aged 18 or over

and

(2) Bereaved by cancer

You do not need to have used any bereavement or counselling services to take part. At the end of the survey you will be given the opportunity to comment on the survey, to provide feedback. You don't have to agree, and providing your email address does not mean that you are obliged to, it just means we can contact you again.

Do I have to take part?

No. Taking part is completely voluntary. If you decide not to take part, or if you choose to withdraw at any time, this will not affect you in any way. You can stop completing the survey at any time. If at any point you don’t want to continue, but you want to submit your answers just close the browser. If you don’t want to submit your answers press the three dots (···) to ‘start again’, then close the browser, and your responses will not be saved.

What will happen to me if I take part?

If you agree to take part, you will be asked to complete an online survey that will take around 15–20 minutes. The survey will include questions about:

* Your relationship to the person who died

* Your experiences of grief, mood, and wellbeing

* Any support you have sought for grief or emotional distress

You will also be asked a few brief demographic questions. You can skip any question you do not wish to answer.

What are the possible risks or disadvantages of taking part?

Some of the questions may bring up difficult memories or emotions about your loss. If this happens, you may wish to pause or stop the survey. There is a “Save and finish later” so you can return to the survey. We will provide links to bereavement support organisations at the end of the survey.

Your contribution will help improve understanding of the needs of people bereaved by cancer, and may inform the development of future support services.

What are the possible benefits of taking part?

Your contribution will help improve understanding of the needs of people bereaved by cancer, and may inform the development of future support services. However, there is no intended direct benefit to you now, although people have reported that completing a survey about an issue that is important to them can be a positive experience.

What if something goes wrong?

If you have any concerns about any aspects of this study, please contact the lead researcher in the first instance (michael.duffy@qub.ac.uk). Should you remain unhappy and wish to make a formal complaint, you can contact the Research Governance Team at Queen’s University Belfast (Telephone: 028 9097 2529; Email: researchgovernance@qub.ac.uk).

Will my taking part in this study be kept confidential?

Your privacy is of utmost importance to us. All your responses will be kept strictly confidential, and all the data you provide will be completely anonymised. Your responses will only be accessible to members of the research team; however, the research team will never have access to any information that could be used to determine your identity. All your responses will be collected, stored, and used in full compliance with the European Commission’s General Data Protection Regulations (2018). All data collected will be stored on a password-protected, secured, and networked computer.

QUB’s Research Data Management Policy can be accessed at-

http://www.qub.ac.uk/directorates/InformationServices/TheLibrary/CustomerService/PoliciesandRegulations/ResearchDataManagementPolicy/

What will happen to the results of the research?

The results of this study will be circulated to mental health professionals and policy makers and also published in a scientific research journal. The findings will also be reported on the QUB and Ulster University websites. You will be able to access a summary report through the Cancer Centre of Excellence website – you can bookmark the address HERE

Who is organising and funding the research?

This study is being carried out by researchers from the Queen’s University Belfast and Ulster University, with expertise in prolonged grief, trauma, mental health, and cancer care.

Lead Researcher: Dr Michael Duffy

Email: michael.duffy@qub.ac.uk

School of Social Sciences, Education and Social Work, Queens University Belfast

Ethical approval for this study has been granted by Queens University Research Ethics Committee (Ethics ref no- 517221).

No funding has been required for this study.

Who has reviewed the study?

This study has been reviewed by the Faculty of Medicine Ethics Committee. Ethical approval for this study was granted (Reference #Ethics ref no- 517221).

Contact for Further Information

Further information is available from the lead researcher Dr Michael Duffy (michael.duffy@qub.ac.uk) or Professor Mark Shevlin (m.shevlin@ulster.ac.uk).

This research will be conducted in compliance with data protection legislation. For more information about how we look after your information, how to access your rights and who to contact if you have any queries or concerns about data protection please visit the Queen’s University Belfast website -

https://www.qub.ac.uk/privacynotice/Research/ListofResearchPrivacyNotices/PrivacyNoticeforResearchParticipants.html

Thank you for your interest in this study and for taking the time to read through this information sheet.